Receiving a diagnosis of diabetes

None of the participants where diagnosed with diabetes when in mental health services, even when participants were displaying signs and symptoms. These went unnoticed by MHNs and other practitioners. Indeed three participants where diagnosed, seemingly by chance, when they were referred to hospital for unrelated mental health or diabetes appointments. Referrals were at the behest of the GP and not the mental health service provider. The other participants (n=4) had diabetes diagnosed within their GP primary care service.

None of the participants reported that their diabetes was ever recognized when in the care of mental health services and all were receiving concurrent mental health and primary care services. That is to say participants recalled being symptomatic when receiving care by MHNs but these symptoms where apparently unrecognized.

Fiona: “Well it didn’t quite sink in, I was devastated and on the one hand I wasn’t surprised because I was overweight and I had a poor diet ….”

Mary: “It was, I kind of think I brought it on myself because I was…drinking lots of high energy drinks”

Kathy: “It made me feel really sad and fearful because I’ve had a number of relatives whose diabetes has been implicated in their deaths…”

John: “In some ways I was quite relieved because I’d been going for several years to my GP saying I’ve got problems with my feet “

Michael: “I was not surprised but I thought you know if I can control it I should be alright because my mother, she lived with diabetes for a long time, ripe old age”

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Paul: “I just sort of, I can’t believe there’s another bloody problem in my life (laugh)”

Jennifer: I guess my first reaction was oh no another thing to deal with and I think I was quite fearful because I wasn’t given any information whatsoever

Theme 6 “If you were a mental health nurse, what would you do

differently for someone like you?”

One way of exploring how to change MHNs diabetes practice was by doing a 360° role reversal so that participants could put their negative experience of diabetes care into something positive that could contribute to MHNs practice. This was a particularly good question as the responses illustrated the complexity of having two complex long-term conditions. Here participant’s views did allude to more advice and knowledge on clinical aspects of diabetes care management, but in a much more practical advice driven content. This was nicely illustrated by one participant,

John: “My doctor said eat regularly, yeah but I don’t get up regularly (laugh), you know so how do I eat regularly?”

Kathy: “We’ve got to treat each person as an individual, we’ve got to know their history and find out a bit more about how their condition affects them and you know in a multidisciplinary team that information could be passed on. “

This illustrates how participants valued more practical help, support and information and if they were caring for people with diabetes, they would use their experience as an asset to help. There is recognition that MHNs had “book

knowledge” but that real practical support came from people with experience of

diabetes. One participant found that peer support was more beneficial for them because it was a

Kathy: “real practical support because people have experienced it themselves, so it’s more than book knowledge.”

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However, participants did not feel confident that MHNs could offer practical advice on managing two complex long-term conditions. Therefore, a problem may arise where MHNs trying to navigate complex conditions do not involve the service user up until the endpoint. It would appear that participants want to be involved at all stages of their diabetes care and would like more advocacy from MHNs, rather than be disempowered by them. Participants did accept that at times MHNs would take over diabetes care e.g. when they were feeling too stressed, but this would be the exception and not the general rule.

Participants felt that their experiences of diabetes or diabetes care are not seen as assets in a clinical or practical sense and seem to go relatively unused in reality. However, I feel these experiences can be rich sources of learning that can introduce MHNs to different perspectives of living and coping with diabetes. This can enhance MHNs personal knowledge of MHSUs lives with diabetes, which can indicate how MHNs can engage and develop effective partnerships in diabetes care with MHSUs. For example, to be more proactive in the organizational management of diabetes care by helping with outpatient appointments, check-ups, checking letters and such. Some participants did recognise that their vulnerability to stress or pressure might make them at times unable to manage two complex conditions without support and empowerment from MHNs.

Poor attitudes that lead to DO were interpreted as discrimination by two participants, e.g.

Fiona: So from kind of awareness around that and you know also we talk about anti discriminatory practice well we need to stop that within people who have mental health problems, not being discriminated against, just you know because they’ve got mental health problems.

One participant suggested that “anti discriminatory practice” should be used as an approach to ensuring that MHSUs are not discriminated against when they report physical symptoms observing that

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However, while MHNs should ask MHSUs with diabetes about their care plan and see how they can help them with the management of it, they should also

Jennifer: So that can be, you know they need to be aware of that kind of thing

and also just to be, like with the care coordinator to talk, it would have been very helpful for somebody when I had been diagnosed with diabetes, to actually sit down with me and look and talk through if there’s going to be interactions between the medication I’m on for my mental health and the diabetes medication. I actually had to take that initiative, if somebody had taken that initiative, you know been a little bit more proactive I think I would have felt less fearful. So yeah.

To this end, there is an opportunity for ‘mutuality learning’ where MHNs should look on the experiences of participants as a means of learning how not to provide diabetes care. This may help prevent MHNs developing or forming negative attitudes or stigmatising MHSUs. Promoting learning through sharing MHSU experiences is already being used in many mental health courses where service users take classes and give lectures to develop a deeper understanding of the experience of mental ill health. The same principle should be applied with MHSUs with physical conditions (like diabetes) so that MHNs get some idea of the experience of diabetes from a MHSU perspective and how they could make care better and of a higher quality.

Participants valued education and training for MHNs and one suggested that

Fiona: “Oh that’s the other thing I was going to say is that I think diabetes nurses should run training for psychiatric nurses”.

The recurring theme of looking to the service user with diabetes rather than at them resurfaced in a note of caution from one participant

Michael: I’d go and presentation in junior nurse induction course and I always say the first thing you do, the first thing you do is make this relationship, otherwise the rest of the time, whatever you try to do or say they will not listen to you, so make that relationship first time, otherwise nothing will work after because I know in my case at that time I was in horrible stage but I do

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remember what people, what they said and this type of thing sticks to your mind.